About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Sunday, January 29, 2012

Hi again folks! Well, guess what? Couple hours after I last wrote, I was talking to Mark when he noticed a trickle of blood coming down my chin. That turned into a full bleed and I really had to pack my mouth trying to stop the bleeding. Hard to tell exactly where it was coming from and certainly difficult to apply pressure. It had stopped @ one point, but I pulled the packing out too soon and it started bleeding again! UGH! I was so darned hungry too! Mark had made some Starbucks Christmas blend coffee that I was really wanting to drink! I had to be soooo cautious all day long. This is soooo disappointing! On the one hand, it ruined my entire day. Had to call Nurses on Wheels to come change my pic site dressing since I got blood on it. There is no telling whether this will happen again @ all anytime soon, or in an hour! I didn't get a chance to do much of anything today from just trying to take it easy after that bleed! Now, I'm going to be worried about this happening @ work tomorrow. I just felt w/as much alcohol as Dr. Yakes had used this past embolization, bleeding was the last thing I would have to worry about! This avm has a life of it's own. I'll keep you posted.Cyndi

Hi Family and Friends! How is everyone?! I'm super excited to tell you that for once in a very long time, I'm actually feeling half way human so soon after a procedure. Seems the last few embolizations found me with complications that were making my recovery extremely difficult, but this time has been much better! I still have good and bad days - still some weakness in the legs, but able to function without being so completely dependant on everyone around me!When I arrive @ work, I always park in a handicapp spot and need that ramp to pull my "cart" that is full of my meds, snacks or anything I need that can make my life easier while I'm @ work! Unfortunately, when a friend joins me for lunch, we sometimes go back in the building through the back enterance and that means climbing 4 steps up to the door - ouch! Steps down aren't too bad, but going up is still a challenge for me right now. My primary care doctor here says that is caused by all the pain pills and what I'm going through.Had some lab work done earlier this week, and my potassium level is good now. Unfortunately, since I was concentrating on that, I was neglecting my iron tablets - I'm anemic. Plus gotta remember to take calcium too, since being on those steroids all the time affects the bone density. Had a test for that not too long ago and it was ok.Plus, there's always the fun of having to sleep w/that darned humidifier on my trache - if I cough during the night, I sometimes wake up w/phlegm on the cup cover on it or even on my chest. Grossss! I know, I just like sharing my experiences with you - I've definitely had it worse, but it sure isn't your basic nights sleep around here either! Right now I'm having the battle between the steroids and the Xanex! The steroids I'm decreasing by 5mg every third day (that helps w/the swelling after a procedure), but they wind me up, where I sometimes find it hard to relax enough to go to sleep. That means having to take a Xanex to take the edge off and relax. Course sometimes taking a pain killer makes me drowsy, but luckily, I don't have to take too many of those @ this point! I'm actually trying a new blood pressure medication - as the one I was taking contained a diuretic and Dr. Yakes staff in CO, felt that was contributing to lowering my postassium level. Whew! If it's not one thing it's another! I'd better get back to bed to read or watch TV until the meds kick in! It's 4:30 a.m. and I had gotten up because it was a little too warm in here when I set the temperature @ 74 degrees! We don't like it cold out here in S. Texas!I'll try and include some new photos here soon! Love to all!Cyndi

8:00 a.m. Well, I sure know how to jinx things! Had headed back to bed and was happy to see one of my favorite movies had just started - Legends of the Fall, so I settled in to watch that. Woke up a couple hours later to find I had a blob of blood on my lip. Darn! After further investigation, I saw the blood had actually already made it down to my top sheet - poopie! Luckily, I didn't have what I call a "gusher of a bleed", but it was enough to disappoint me darn it all! I just hope and pray that there won't be any more episodes. I know this happened before and after speaking with Kelly, Dr. Yakes physician asst., she said it could be from the "alcohol" still settleing in, or whatever work was done in that area. Hmmmm...... please keep the prayers coming. We need all of you with us on this journey. Thanks.

Friday, January 20, 2012

How is everyone? This trip, Mark accompanied me to CO., and we took off from Corpus Christi about 6:00 a.m. Tuesday morning, Jan 17th. Arrived in Denver a few hours later to find it was 10 degrees there, yikes! There was snow and ice on the ground. We had a high of 80 degrees the previous day here in Corpus! Anyway, I had been concerned over a slight cough and had to get some phelgm out - gross, I know - but was hoping it wouldn't affect my procedure the follwing day. Turns out during my Nov. procedure, I had a sinus infection and was so congested I was miserable when I woke up in recovery and did not want to be repeating that experience! We decided to go see Kelly, Dr. Yakes P.A. @ Swedish, to ask if there was anything that could help me out. She wrote me a prescription for an inhaler and some Musinex over the counter. I asked Kelly if any of Dr. Yakes patients had lost their mind before finishing all their procedures, because I felt I was 3/4's of the way there! She told me no one had yet! Course I did kidd her about whether she would be answering the question truthfully! For me, most of my "fear" with this avm, is of the spontaneous bleeding. Scary not knowing when that will happen, for how long and whether we can get it under control! Don't want that happening @ work either! For some of you that may not know yet, I have been moved to the main probation office on Trojan Sreet. So now, my job is in the background and not @ a front desk where I have to answer phones and greet the defendants! This area works much better for me and I can go @ my own pace and am very comfortable, considering all I'm going through! Lots of computer work/paperwork! My supervisor and HR director have said they will accomadate me in any way they can, so that helps a lot! Especially the next few days, since the IV Antibiotic is done 3 times a day, I need Nurses on Wheels to come by and do the mid-afternoon dosage! A culture was taken right before I made this trip to CO, and it was showing it was still positive for a pseudomonous infection, so that meant meeting with the Infectious Disease doctor in CO - and he put me on a different IV antibiotic for another week! Mark does the morning and evening dose and each takes 30 minutes. (see photo of what the Nurses on Wheels call a "grenade" IV - this is super handy - once Mark hooks up the blue part to my pic site, I can walk around with that "grenade" in my pocket until it is done)!

Back to the avm, course right now I seem to be having problems controlling these pseudomonous infections - once the wounds heal on the left side of my face, that should stop! With those infections, come the IV Antibiotics and I really dislike having that pic site on the back of my upper right arm! It makes taking a shower difficult, as I need to keep it dry so I won't get an infection in that area. I also try and not wet the wound on my face, (even though wound care techs say it's ok) so that makes taking a shower a challenge!

Headed to my ENT appt. the afteroon we arrived to make sure all my air passges were clear. Had some numbing spray put up my nose, so the doctor could insert the thin hose that would show him what was going on up there. Ugh! Everything was good, so that was great news! We had that doctor put my new trache in that I usually get done during the procedure - that way any hacking I had been doing wouldn't have clogged my trache tube.

Then headed to Whole Foods to get something for dinner to take back to the hotel! We finally used the gift card our friends Jon and Felice gave us a while back - thanks so much!

I should have listened to Kelly and Mark when they suggested I spend the night in the hospital before my procedure the following day. What was keeping me from doing that, was not likeing having to drag that IV pole w/me every time I need to go to the bathroom! Unfortunately, neither Mark nor I slept well. That hotel bed is too soft and I have to sleep almost sitting up due to the avm, and kept sliding down the pillows Mark had stacked up for me! I also sleep w/pillows under my knees for support. (I am really enjoying my hospital bed @ home! I can adjust that just right! Some times during the night when I'm more asleep than awake and trying to figure out why I can't move my legs - I find it's Hanz and Bella come to sleep with Mommy! I love my iddybooboos! They spend time with Mark on the couch too! Poor Mark, we haven't figured out how the best way or place for him to sleep. He doesn't like the sound of my aircompresor/humidifier that I need to sleep with on my tache, plus w/the steroids, I'm sometimes up late and that doesn't help him get a complete night's sleep!) Got up about 5 a.m. the day of my procedure - couldn't stand the bed anymore and I had some lower back pain going on from that soft bed. We reported to Swedish @ 6:30 a.m. to get registered - the two ladies that register patients are super nice and always cheer me up!

Later when some blood work was taken, my potassium level was too low to go ahead with surgery! The P.A. and nurses got me some IV Potassium, so I had to wait another hour and get more blood work done to see if my level was up enough where I could have the embolization that day! Even though it was still low, it was determined they could go ahead w/the procedure. I just can't emphasize enough how nice everyone @ Swedish is! They have become like a second family to me and really go out of their way to make sure I'm being well taken care of! While I'm waiting to go into surgery, the nurse gives me a breathing treatment and sets up my trache with the humidifier to keep it moist.

I was happy to see Quinn, one of my favorite anesthesiologist would be assisting Dr. Yakes. I'm also familiar with Wendy, another anesthesiologist, I always get the feeling these ladies really care about their patients! I had been wondering if one of my favorite nurses worked there still and he popped in to say hello! Said he saw my name on the schedule the day before and made it a point to come see me! His name is Rick Smith and he's been my post-op nurse a couple times - very good to his patients! He would put a fresh gown on me and get rid of the one that had blood. Made sure I got some vaseline on my dry lips and was as comfortable as possible! Actually we were telling all the nurses once I was put in a room, how fantastic they all are!

I had spoken to Kelly (wearing black top and print skirt) about telling Dr. Yakes to go easy on me this time. Dr. Yakes came over to talk a few minutes before I was put under - Mark and I had been meaning to bring Dr. Yakes an autographed photo of Mike Fossum, Astronaut! I'm sure most of you know that Mike is my brother-in-law Greg's oldest brother! I got to tell Dr. Yakes myself to take it easy on the amount of alcohol he would inject in my face - although I know he knows best what he needs to do! He ended up using 21 cc's of alcohol - that's a lot! Right before I was put under, the doctor for Infectious Disease and Control came in (wearing a bow tie) and he told Dr. Yakes that the "black scab" on my wound site could come off. That area needs to heal under that scab. See photo of wound site before and after.

Last thing I remember, was scooting over from the bed I was brought in on, to the one in the surgery room. I had just gotten into the right position, closed my eyes and next thing I knew, I woke up in recovery and it was time to put me in a room! Yay! I didn't wake up and have to lay there miserable for the first time in a while! Last procedure I had a sinus infection and was terribly congested and my lower back hurt from laying flat due to the angiogram Dr. Yakes does on every procedure! Once I was put in a room, I slept a good while although not ready to eat anything yet. Drank some water, juice and slept. I barely remember watching American Idol, but knew it was being taped @ home on the dvr! Mark was there with me and I vaguely remember him having something to eat while watching TV.

At one point, Mark came in my room and said, "Look who I found" - I was happy to see Saba was working that evening, so I got to see her several times when she came in to take my vitals! I gave her a break and didn't take her photo like I always do! She's a good sport! Saba asked how I was doing, and told her I was tired of the whole process and wondered whether I would ever be well again. She told me I would be ok. I know she's seen a lot of Dr. Yakes patients, so I'll trust her on that! I told her I had not brought my own Saba (Build a Bear), as the past couple procedures I hadn't felt well, so I didn't want to be worried about her losing a shoe or bow! Becky is another nurse that took time to come in to see me - she's another favorite! We were telling the nurse that wheeled me out when I was discharged how amazing they all are, and she responded with, "we love our patients"!

The wound care nurse came to see me as well - Pam Locke (see photo, straight brown hair and glasses). She wrote out some wound care orders for me to give to the wound care people down here. Pam has always done such an excellent job with my wound care @ Swedish!

Somewhere in between I met with the Doctor for Infectious Disease again, and he suggested I keep the pic line so I could get more IV antibiotics! This round will be 3 times a day for another week! Somewhere between all the doctors and nurses visits, I was able to take a shower Thursday morning! Mandi, Dr. Yakes other P.A. is the one that discharged me from the hospital. She is super sweet - such a great team Dr. Yakes has working with him!

After leaving the hospital, we had just enough time to pick up a prescription @ Wal-greens, repack our bags and check out of the hotel before heading out to return the car rental! Picked up something to go @ the airport and made it in time to catch the flight! With all the meds I was on, I kept dozing off and spilling my drink, a smoothie, then a sprite - so I had the poor flight attendant busy cleaning up! Sorry!

Meanwhile, couldn't wait to land - I have a co-worker, Cheryl D. that was nice enough to watch our kiddo's while we were in CO! She has a beagle named Prince and we had run into them @ Petsmart in December when we took Hanz & Bella to get their photo taken with Santa! Happy that Prince, and our two kids got along great! I could tell all our furry kids would get along great and with Cheryl being a real dog lover, I know Hanz and Bella felt right @ home! Sadly, my dear friend Sylvia that usually took care of Hanz and Bella for us, had to put down her Bischon of 16 years, O'Bear. He was just too old and in arthritic pain - I'm just heartsick for her loss. Our condolences to her.

I'm hoping to schedule my next embolization for the second week of March and that Celia can go with me! This way, it gives Mark a break and the kids can stay home with him! I plan to go to work in the morning, even though my family wishes I would take another day or two off. Right now, I'm still very swollen and there is a little bit of drooling involved - the cut on my lip lets drool run down my chin, so sometimes in the morning, my t-shirt is wet. Haven't done much or gone anywhere, 'cept to Mom and Vicente's yesterday evening for dinner. Gives Mark a break from the kitchen and we love playing Mexican Train w/Mom and Vicente. I was ready to come home and get more rest. Have to balance out the steroids and pain pills in order to function! Got some ear drops from the ENT to help, plus need to make sure I take the daily meds, plus potassium, iron, calcium .... the list never seems to end! I desperately need to work w/my therabite, but haven't made the time, and was afraid before w/the bleeding I had been having from my mouth! Whew!

Thank you so much everyone for all your love, prayer and support! It means the world to us and we're really hoping to see the end of this avm one day! Love and hugs to all!

Mark, Cyndi, Hanz and Bella!

Jan. 24, 2012

Just had to add that I 'm so happy to be doing well so far! Hope I don't jinx it, but let's hope it's a turning point in my recovery! Went through some difficult times, let's hope it's time for some major healing with no bleeding or infections anymore! Everyone @ my job has been so supportive and helpful in every way possible! Yay!